Debbie Foster watches as her 15-year-old daughter, Lydia, is held by her older sister Rebekah, 18, when a seizure hit recently in the living room of their small Colorado Springs apartment. Lydia and her four sisters live in Colorado Springs after her mother moved part of the family there to take advantage of medical marijuana laws. They feel that the cannabidiol oil she can get in Colorado is more helpful for her seizures than any of the prescription drugs she has tried. Her father and her older siblings live on the family's small farm near Gettysburg. (Joe Amon — The Denver Post)

Jackson Salemme, 7, plays with his father's cell phone, while his mother, Cara, background, plays with his brother Cooper, 2, earlier this month at their home in Spring Grove. Jackson developed a form of epilepsy when he was younger and has since developed cognitive impairments and become non-vocal, in addition to suffering seizures. (Shane Dunlap — The Evening Sun)

Jackson Salemme can play with his dad's iPhone. Holding the device as it lights up and makes noise seems enough to keep the 7-year-old amused for hours.

But his boyish giggling and grin aside, he cannot tell his parents he is having fun. He cannot tell them how happy he is, because he cannot talk.

Jackson has epilepsy, a neurological disorder that causes seizures and renders many sufferers nonverbal.

In the last two years, the North Codorus Township child has experienced hundreds of seizures. His parents, Chris and Cara Salemme, have tried a dozen prescription medications, steroids and a rigorous diet, all to no avail.

Lydia, 15, celebrates with her mother, Debbie Foster, after winning a game of Demon in the living room of their small Colorado Springs apartment. The family hopes Pennsylvania will legalize medical marijuana so they can live together in their Gettysburg home. To see more photos of families in this story, visit photos.eveningsun.com. (Joe Amon — The Denver Post)

Now, they want to treat Jackson with Charlotte's Web, a type of marijuana that might help reduce seizures. But that option is off the table in Pennsylvania until medical marijuana is legalized by the state's General Assembly. There is a legislative effort underway to legalize the drug, but how far it will get remains to be seen.

Named after Charlotte Figi, a 5-year-old girl with epilepsy who suffered hundreds of grand mal seizures a week, Charlotte's Web contains high levels of cannabidiol oil, CBD, one of many marijuana compounds, but low levels of tetrahydrocannabinol, or THC, the psychoactive ingredient that gets users high when smoked. Before taking the oil, Charlotte could not walk, commonly went into cardiac arrest and could barely speak. Two years later, she is largely seizure-free and able to walk, talk and feed herself.

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While some have said Charlotte's story is merely anecdotal, many parents are willing to try anything to reduce their child's seizures.

Medical marijuana advocates insist the debate is not about getting high. They do not want their kids to smoke the plant. The oil can be taken orally, much like cough syrup, or mixed into food.

Angie Sharrer, helps her daughter, Annie, 9, with a trampoline in her playroom in their home in early February. Annie has a form a generalized epilepsy. (Shane Dunlap — The Evening Sun)

The Salemmes are happy to see Jackson play the simple, repetitive games he enjoys, but they can do little else for him as they watch their son's childhood slip away. And as their options dwindle, their mounting frustration has led them to join several area families who have embroiled themselves in the legal debate surrounding medical marijuana.

But with legislators reluctant to vote for legalizing a drug that lacks federal approval, the debate could wage on in Pennsylvania for years.

Worth the wait?

Shortly after returning home from a family vacation in July 2011, Jackson came into his parents' bedroom, complaining of a headache. His mother thought he had the flu, so she pulled him into bed with her.

Jackson was diagnosed with epilepsy, a brain disorder marked by recurrent seizures. Behind migraine, stroke and Alzheimer's, epilepsy is the fourth most common neurological disorder in the United States, according to the Centers for Disease Control and Prevention.

There are 200,000 new cases of epilepsy diagnosed each year, according to the Epilepsy Foundation. Of those diagnoses, 45,000 are children younger than 15. And in 70 percent of new cases, no cause is apparent.

For a year, Jackson was on the ketogenic diet, a precise, high-fat, low-carbohydrate eating pattern that constantly burns fat. Neurons in the brain sticking together causes seizures. The diet combats that by creating ketones in the body, an energy source derived from fat metabolism that keeps brain neurons bouncing off each other.

Like many children with epilepsy, Jackson requires constant supervision. His parents brush his teeth, dress him, bathe him and help him eat.

The family's home has a security alarm that beeps anytime a door opens. One time, Jackson inadvertently walked outside by himself, almost wandering into the street before Cara realized he was missing.

Lili Gilmore, 12, who has a rare form of epilepsy called Lennox Gestault syndrome, sleeps in her swing in January. Lili's daily routine might involve bursts of activity followed by exhaustion. (Shane Dunlap — The Evening Sun)

The Salemmes think Jackson's medications are hindering his cognitive development, but they cannot get him off them.

"Being a family with a special-needs child, you learn so many things," Cara said. "It's like a roller coaster."

Scientific evidence?

The cannabis plant contains compounds researchers have been interested in for a long time, said Dr. William Trescher, division chief of pediatric neurology at Penn State Hershey Children's Hospital.

While the research is still limited, Trescher said there are laboratory models of how these compounds work in the brain. Using animal models, researchers have found that some cannabis compounds can diminish seizure activity, he said.

"It's difficult to say whether they completely control it, but they can provide a beneficial effect to animal models," Trescher said. "It gives rise to people wondering if this works in humans."

Still, many medical professionals, including Trescher, are skeptical.

"The truth is we lack evidence not only for the efficacy of marijuana, but also for its safety," wrote Orrin Devinsky and Daniel Friedman, physicians at New York University's Comprehensive Epilepsy Center, in a Feb. 12 op-ed in The New York Times. "Scientific studies have yet to bear out the hopes of these desperate families."

But Cara Salemme sees a blurred distinction among evidence types.

"When does anecdotal evidence become evidence?" Salemme asked. "These are real people. It's so mind-boggling that it's not simple."

A lack of scientific evidence would prevent Trescher from advocating for medical marijuana, but he said he can understand the desperation of parents whose children's seizures cannot be controlled with traditional medicines.

Parents like Natalie and John Gilmore, a West Manheim Township couple whose 12-year-old daughter, Lili, suffers from Lennox-Gastaut syndrome, a severe form of epilepsy. Doctors have told her parents their daughter has some form of seizure activity in her brain every four seconds.

Lili has been on more than 20 medications, some more than once, her mother said. But her condition remains so severe, she is at risk of sudden death.

But maybe there is hope.

She will soon participate in a clinical trial at New York University's Langone Medical Center that will test using cannabidiol oil to treat epilepsy on 25 patients. Conducted by Devinsky, the study will determine if there is a change in subjects' seizure frequency, according to the medical center's website.

"We don't know if it will help. We just want the opportunity to try it," John Gilmore said. "There's so much hope."

Angie and Matt Sharrer are hopeful that someday, their 9-year-old daughter, Annie, will be able to climb the stairs at the family's Tyrone Township home by herself.

Annie has epilepsy, and suffers several seizures every week. Because of her condition, she is unable to roam the family's house or ride a bike unattended.

Annie's parents have tried more than 10 medications to reduce her seizures.

They put her on the ketogenic diet for two years, taking almost three hours to ration out each meal's gram-specific food portions on a scale. A chicken salad consisted of 20 grams of lettuce (a little more than half an ounce), 10 grams of mayonnaise and three grams of chicken, Matt Sharrer recalled.

But the diet made her hungry and irritable.

If Annie's seizures could be reduced, her parents said, they are optimistic she would be able to make developmental gains and be a happier kid. She learned sign language when one of her medications reduced her seizures. But the most effective seizure-reducing medication gave his daughter pancreatitis, Matt said.

Epilepsy can also be treated surgically by removing the affected part of the patient's brain.

Lisa Wolfe Sichelstiel's 10-year-old daughter, Hannah, suffers from Dravet Syndrome, a rare form of epilepsy believed to be caused by genetic mutation.

The Carroll County, Md., mother said doctors initially thought Hannah was a perfect candidate for surgery. But a blood test revealed a characteristic in Hannah's genes that ruled out surgery, Sichelstiel said.

After trying and failing the ketogenic diet, Hannah had a vagus nerve stimulator implanted in her four years ago. The device works like a pacemaker, giving weak electrical signals along the neck's vagus nerve to the brain. The signals are intended to prevent the electrical bursts in the brain that cause seizures.

Hannah still requires constant attention, though, and is on four medications. She attends school at Ebb Valley Elementary in Manchester, Md., where she works with a personal aide at all times.

Like Cara Salemme and Angie Sharrer, Sichelstiel is a stay-home mom, putting aside her career to care for her child.

Hannah does not talk much, her verbal skills having deteriorated over the years from so many seizures.

She will probably never read or write, Sichelstiel said.

The cannabidiol oil could help reduce her seizures, though, she said.

"If we could get her seizures stable, I could care less if she ever reads or writes. Let's just get her a good quality of life," Sichelstiel said.

Changing the law

The Compassionate Use of Medical Cannabis Act, Senate Bill 1182, would legalize medical marijuana in Pennsylvania. Proposed by Sen. Mike Folmer, a Republican who represents several counties in eastern Pennsylvania, the bill has already gained bipartisan support from more than a quarter of the Senate.

Folmer said he wants Pennsylvania to be the leader in medical marijuana research. He said scientists are only beginning to scratch the surface of what the cannabis plant can bring to sick people — everyday people fighting cancer, post traumatic stress disorder, diabetes and epilepsy.

"People are wondering why they're not able, through a prescription, to have access to these medicines that are proven to work and no one has died from," Folmer said. "There have been no deaths from overdosing, because you can't."

But some legislators are hesitant to vote for a bill that would legalize a drug outlawed by the federal government. Gov. Tom Corbett has said that, if the federal government has not approved the drug, he will not sign the legislation if it makes it to his desk. While research has been done on medical marijuana, clinical testing is limited, slow and cumbersome because of its federal classification as a Schedule 1 controlled substance. That means marijuana is considered to lack safety for medical use and comes with a high potential for abuse, according to the Drug Enforcement Administration's Office of Diversion Control.

"I just want to make sure there are proper safeguards to make sure Pennsylvania doesn't become the next Colorado or California," said state Sen. Rich Alloway, R-Chambersburg, vice chair of the Senate's Law and Justice Committee, where Folmer's bill awaits approval. "If we do something, it could be a problem with the federal government."

Like Alloway, state Rep. Dan Moul, R-Conewago Township, does not want Pennsylvania to become the next Colorado, which legalized recreational marijuana use last year.

Medical marijuana has been on the Legislature's radar since Moul took office eight years ago, he said.

The only way he would vote for legalizing medical marijuana, Moul said, is if it could be prescribed by legitimate physicians and not "some quack doctors for a sniffly nose."

But as the medical marijuana debate wages on in Harrisburg, Moul said, there are kids suffering.

"Even if it's a shot in the dark, we should do something," Moul said.

The law and justice committee's chair, Sen. Chuck McIlhinney, said he does not know if he could vote for Folmer's bill as it is proposed. The Republican serving Bucks and Montgomery counties said he wants to learn more about medical marijuana and the bill, but said the idea that states should wait around for the federal government has never held weight for him.

"We'll decide what's right for our citizens," McIlhinney said.

Folmer said passing his bill is going to be a battle, but he wants to continue to educate legislators and the public about what he referred to as a "wonderful plant."

Giving it a try

There are reports of seizure reduction coming from kids who have tried cannabidiol oil where medical marijuana is legal. A Gettysburg-area family did what the Salemmes and Sharrers are considering.

Debbie Foster has been living in Colorado Springs for the last three months with her daughter, 15-year-old Lydia.

Lydia has been taking Charlotte's Web for about two months since her mother brought her and her four sisters to Colorado from their Straban Township home.

There has not yet been a miracle cure for Lydia, but Debbie said in a phone interview there was an initial reduction in her daughter's seizures. At one point, Lydia went 25 hours without a seizure since taking the oil.

She is having fewer seizures at night, Debbie said, which is allowing her to get more sleep. And some of the more severe seizures her daughter used to have seem to stop before becoming full blown, Debbie said.

Debbie's husband, Bob Foster, stayed home, keeping his job as a teacher in Carroll County, Md. He said living apart from his wife and five of his daughters is difficult and lonely.

"We have a lot of support from our church," Bob said. "That makes it easier, but it doesn't take away the pain."

The timetable for the Fosters to keep their family divided is indeterminate. Debbie and Bob, both 54, said they want to see Lydia take Charlotte's Web for at least six months before bringing her home.

There are some patients in Colorado who started taking the oil around the same time Lydia did and are now seizure free, Debbie said. While they want to see the alternative treatment reduce Lydia's seizures, they want to be able to use it in their home state.

"There's just no sense to that," Debbie said of having to separate her family to treat her daughter's seizures. "This medicine not only should be grown in our state, it should be able to be sent through the mail. People who are scared of marijuana do not have children like this."

Being able to hear his son's voice again would make for an amazing day, Chris Salemme said, wiping a tear from his face. But until his seizures can be substantially reduced, he will continue to play without saying a word.

"It just boils down to 'why not give it a try?'" Salemme said. "Statistics on a regular epileptic drug working are not good anyway."

It has been almost three years since Cara has heard Jackson say, "Mom."

She and her husband — and the parents of Annie Sharrer, Lili Gilmore, Hannah Sichelstiel and hundreds more across Pennsylvania — just want the chance to give their kids a more normal childhood.

"I want to meet him again," Salemme said of her son. "That's what this is about for all these kids."

Mark Walters covers Adams County for The Evening Sun. Contact him at 717-637-3736 ext. 147.

Bureaucratic red tape?

Schedule 1 controlled substances can be part of clinical research, but the conditions are restrictive and require a license from the Drug Enforcement Administration, said Morgan Liscinsky, Food and Drug Administration spokesperson.

Through the Drug Enforcement Administration and the National Institute on Drug Abuse, the federal government has approved some research on marijuana and its derivatives, with roughly 300 research licenses for Schedule 1 substances.

Despite its status as an unapproved new drug, the Food and Drug Administration has found a lot of interest in using marijuana for conditions including glaucoma, neuropathic pain and treatments of spasticity associated with multiple sclerosis, Liscinsky said.

Marinol and cesamet, which contain THC, are approved by the Food and Drug Administration, according to the administration's press office. The two marijuana derivatives were shown to relieve nausea associated with cancer chemotherapy and stimulate appetite in patients with wasting syndrome.

But the hard, scientific evidence to date is not sufficient for the marijuana plant to fully gain administrative approval, health and drug officials say.

There is not enough evidence that marijuana's benefits outweigh its risks, according to the National Institute on Drug Abuse. Additionally, the long list of chemical compounds in the plant has held up federal agencies from issuing endorsements.

The Pennsylvania Medical Society has urged marijuana's schedule status be reviewed, with the goal of facilitating the conduct of clinical research and development of cannabinoid-based medicines, said Dr. Michael Fraser, executive vice president of the society.

"We believe a compelling case exists for a serious scientific examination of the potential medical use of marijuana," Fraser told Senate Law and Justice Committee members at the Jan. 28 hearing for Senate Bill 1182.

While many people claim federal agencies are hindering medical marijuana's approval, a spokesperson with the White House's Office of National Drug Control Policy said there is a lot of confusion about the issue.

"The misconception is that the federal government opposes medical marijuana," said Rafael Lemaitre, communications director for the policy office. "The federal government supports the FDA process, which is based on scientific evidence. If there's a pill form or delivery form determined to be safe and effective, then great, let's make it available."

Medically speaking

Dr. Gregory Krauss, a neurology professor and epilepsy specialist at Johns Hopkins University, said there has been a lot of excitement about a miracle treatment for epilepsy with medical cannabis. A lot of patients have been calling and asking Krauss and his staff about cannabidiol oil, he said.

Any administering of medical marijuana with the FDA's approval would first require an efficacy study, which would come after smaller pilot tests determined the drug's safety and any potential side effects, Karuss said.

But it is difficult to conduct the necessary large-scale studies needed to prove the efficacy of medical marijuana, said William Trescher, division chief of pediatric neurology at Penn State Hershey Children's Hospital.

The FDA-approved medications are studied and produced by people and companies who want to make money, Trescher said. The fact that there is not much money to be made researching medical marijuana, on top of its illicit nature in most states, limits the ability to study it, he added.

In the anecdotal evidence, Trescher said there are reports of 80 to 85 percent of the children treated with cannabidiol oil receiving benefits.

Trescher said he does not try to talk parents out of moving somewhere they can try the oil if they feel like they have tried everything, but he said a lot of research needs to be done to further study medical marijuana.

"Most medicines we've used have been very well studied," Trescher said. "We know their effects, side effects, potential side effects. We don't have as much evidence of that regarding cannabis compounds. We don't know their effects on a developing brain. I would not recommend it for the average person. But we're often talking about children who are having seizures that have not been controlled with traditional methods."

Chris Salemme jokes with his son, Jackson, 7, in January at their home in Spring Grove. (Shane Dunlap — The Evening Sun)